RARE Daily

Rare Leader: Blynda Killian, President, Cyclic Vomiting Syndrome Association

March 11, 2021

The Basics
Name: Blynda Killian

Title: President

Organization: Cyclic Vomiting Syndrome Association

Social Media Links:

Disease focus: CVS is an unexplained disorder of children and adults that was first described by Dr. S. Gee in 1882. The condition is characterized by recurrent, prolonged attacks of severe nausea, vomiting, and prostration with no apparent cause. In some, there is severe abdominal pain. Vomiting occurs at frequent intervals for hours or days (1-4 days, most commonly). The episodes tend to be similar to each other in symptoms and duration and are self-limited with return of normal health between episodes.

Headquarters: Milwaukee, Wisconsin

How did you become involved in rare disease: My son is affected by a cyclic vomiting syndrome. He has what is characterized as a severe case of a cyclic vomiting syndrome or CVS. His episodes would last for weeks. Usually, he would be sick for two weeks and then fine for two weeks, and then he’d go back to being sick for two weeks. That eventually led to him getting stuck in what they call coalescence where there’s no recovery time between episodes. His longest period of vomiting was almost 17 weeks. You can imagine that we’ve seen some pretty horrific things happen to us on this diagnostic journey, including almost losing him.

Previous career: Continues to work as a licensed property and casualty insurance agent.

Education: High school graduate and some college work. Life led me in the direction of being an insatiable learner with a passion for volunteering. I fell into being an insurance agent and I have been doing that for more than 23 years. Life experiences have shaped my education and led to volunteering for my organization and volunteering as a patient and family advisor for a hospital that had given up on my son.

The Organization
Organization’s mandate: Our mission is to serve the needs of cyclic vomiting syndrome sufferers, families, and professional caregivers by raising awareness and providing education and support to those who are affected by cyclic vomiting syndrome.

Organization’s strategy: Since we’re focused on the needs of the community, we tend to not only look to the patient population but also to our medical advisory board to see where we can have an impact, not only to facilitate immediate changes, but potentially stuff that can help us further down the road.

Funding strategy: CVSA has always been a grassroots type of fundraiser. We’ve already worked at approaching some pharmaceutical groups about donating for some of our conferences, but we’re looking to expand into grant writing. We expanded our funding strategies to include peer-to-peer fundraising, impact funding, and broadening our social media strategies so that we can get more involved with the community and share their stories, while encouraging support of CVSA.

What’s changing at your organization in the next year: We anticipate having a big year this year. We’re actually finishing up an update to our pediatric clinical treatment guidelines that were originally published in 2008. They were the first of their kind. In 2019, we published open access adult treatment guidelines. A lot of patients, even my son who is 23, are still treated off of pediatric guidelines. Getting those updated is going to be huge for us. Every time some guidelines are published, it opens up more people’s eyes and makes more people aware that it is an actual condition, as well as providing ways to treat it. We’re also working with a couple of pharmaceutical groups that are finally getting to the point that we might have the first medication specific for CVS, but this has been a long, drawn out process and heavily impacted by COVID.

Management Style
Management philosophy: Communication is huge with me. I lead by example. I believe having an open line of communication and being able to communicate is very impactful to the success of any venture.  I hope to inspire others to be driven to make change. I wouldn’t ask someone to commit to doing something that I myself wouldn’t. I started out with CVSA as a volunteer and hope to keep inspiring people to volunteer with us. That inspiration comes from within, especially with a mostly volunteer run organization.

Guiding principles for running an effective organization: Recognizing why we’re here, what we influence, and what we need to change. Our board staff and volunteers are comprised of people who are all impacted in some way by CVS. We’ve all had experiences that have pushed us to want to make a change. We need to keep that in mind as we work to help make a difference for others and for the future of CVSA and CVS recognition and awareness.

Best way to keep your organization relevant: It goes back to communication. Whether it’s our patient population and helping them explain CVS to others, or CVSA communicating what is being worked on and why it’s important to the community. Connecting with legislators, pharmaceutical companies—it all comes back to providing that level of communication, ongoing conversations with the medical community and groups for collaborating, and education and awareness. You just have to be open to those opportunities.

Why people like working with you: I’m driven, committed, and enthusiastic. I give 110 percent all the time. I’m committed to changing the recognition and awareness of CVS, and I’m committed to the community because I’m part of it. I’m driven to making CVSA successful, and driven to making a difference because I don’t want to have other parents have the same experiences that I did.

Mentor: I don’t have a specific mentor. There are people who I draw inspiration and ideas from. That’s prevalent in the rare disease community. There are so many people who are driving the same ideals and share the commitment that I have.

On the Job
What inspires you: My son inspires me. His life has changed drastically because of his experiences with CVS, yet he still made the cognizant decision to want to help others. At 13 years old, he was forced to grow up early because of his life’s challenges. He ended up being a case study for a doctor who we were finally able to get to help us and he didn’t hesitate when he asked him to become a case study because he didn’t want other people have to go through what he did. To me that’s inspiring. I want to make a difference because of him.

What makes you hopeful: I always have hope. When things were their bleakest for my family, we always had hope. Even on the lowest days of feeling overpowering defeat, I would still only let that go on for so long before I would get up and start making the change because it starts with me. If you don’t have hope, you don’t have drive. For CVSA, I am very hopeful that we’ve attracted some of the pharmaceutical groups that are working in the CVS space. We have potential applications for medications that are the first of their kind. That’s huge. The effect of that on the community and the people who are suffering is just astronomical. Having anticipation of a treatment definitely gives me hope.

Best organization decision: Developing the clinical guidelines or hosting medical symposia. Both of those have been game-changers when it comes to medical recognition of CVS and has prompted more people to look into CVS and research it.

Hardest lesson learned: Being a small organization we tend to be very trusting, but we’ve learned that people don’t always have the best intentions.

Toughest organization decision: Canceling our in-person conference because of COVID. That was probably the toughest. Having the comradery and ability to meet with others affected by this condition is priceless. Having a couple of days to hear about the latest research, meet and talk with the experts in the field of CVS, and meet others is an opportunity that our community cherishes and relies on. Canceling. It was really tough.

Biggest missed opportunity: Not getting the organization on social media quick enough. That probably had the biggest impact on the organization—not being visible in a place where people have been able to expand their access to information and support.

Like best about the job: We’re making a difference. Being able to talk to people and hearing that just being able to have those conversations with somebody who knows about CVS is impactful for them.

Like least about the job: That we can’t get enough people who want to or are able to help. CVS is a very debilitating condition. Even we had to wait for my son to be somewhat controlled before I could delve completely in.

Pet peeve: People who don’t follow through. It’s so frustrating. You were asked to do something. You agreed to it. If you can’t, just say “No.” There’s nothing wrong with saying “No.”

First choice for a new career: I’d be a nurse.

Personal Taste
Most influential book: The Last Lecture by Randy Pausch and Jeffrey Zaslow

Favorite movie: Pride and Prejudice

Favorite music
: Techno dance

Favorite food: Salsa. You can hold the chips. I would eat it with a spoon.

Guilty pleasure: Video games

Favorite way to spend free time: Using power tools on fun projects or slowing down enough to decorate a cake. The tools in the kitchen and garage are both mine.




Stay Connected

Sign up for updates straight to your inbox.